Autism rates soar, now affects 1 in 68 children
Karen Weintraub, Special for USA TODAY 6:25 p.m. EDT March 27, 2014
Autism rates climbed nearly 30% between 2008 and 2010 and have more than doubled since the turn of the century, according to a new study from the U.S. Centers for Disease Control and Prevention. The condition is now believed to affect one of every 68 8-year-olds – up from one in 88 just two years earlier.
That means virtually every grade in every elementary school has at least one child with autism – a seemingly astonishing rise for a condition that was nearly unheard of a generation ago.
What's still unknown is the driver of that increase. Many experts believe the rise is largely due to better awareness and diagnosis rather than a true increase in the number of children with the condition.
"We don't know the extent those factors explain in terms of the increase, but we clearly know they do play a role," said Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities at the CDC. "Our system tells us what's going on. It (only) gives us clues as to the why."
The aging of parents is also known to be a factor; the chances of autism increase with the age of parents at conception.
"But that's not the whole story is it?" said Robert Ring, chief science officer for Autism Speaks, a research and advocacy group. Whether something in the environment could be causing the uptick remains "the million-dollar question," Ring said.
Despite their concern, experts said they were not surprised by the increase, because other data had suggested the numbers would continue to climb. In New Jersey, for instance, autism rates were 50% higher than in the rest of the nation in 2000, and they remained that much higher in 2010 – suggesting the national rates will continue to rise to catch up, said Walter Zahorodny, a psychologist who directs the New Jersey Autism Study. "To me it seems like autism prevalence can only get higher," he said.
The new study also showed that blacks continue to lag behind whites and Hispanics in diagnoses. Zahorodny, also an assistant professor at Rutgers New Jersey Medical School, said the gap has persisted for so long that he thinks it may be real – that blacks may be less vulnerable to autism for some unknown reason. Others are quicker to blame lack of medical access for the difference.
"We know that there are significant under-diagnosis problems in minority communities and among women and girls," said Ari Ne'eman, a member of the National Council on Disability and president of the Autistic Self-Advocacy Network. The group tries to empower autistic people to advocate for themselves. The new CDC numbers show five times more boys with autism than girls. The girls and blacks who have intellectual disabilities as well as autism are getting counted, but the smarter kids are not, said Ne'eman, who has autism himself. "Many of the cases that are easier to miss are being missed in those populations."
To be diagnosed on autism spectrum, someone must have deficits in three areas: communications, social skills and typical behavior. Roughly one-third of the children in the CDC study also had intellectual deficits, with the remainder showing normal or above-average intelligence.
To come up with its new figures, the CDC reviewed medical and school records from 2010 at 11 different sites across the country. There is a huge range in autism prevalence across those sites, from one child in 175 found with autism in Alabama, to one in 46 in New Jersey. Boyle said the difference may be explained, at least in part, by differences in community resources for identifying and serving children with autism. Other reporting sites were in Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, North Carolina, Utah and Wisconsin.
The CDC has used the same method to determine autism prevalence every two years since 2000, showing a 120% increase in autism rates between 2000 and 2010.
The average age a child is diagnosed with autism has fallen, but remains above age 4 – though diagnosis is possible by age 2. Research suggests that the earlier a child with autism receives therapy the better the chance of limiting their deficits.
The message to parents is that if they have concerns about their child's early play, speech or movement, they should raise those concerns with with doctors and caregivers, Boyle said.
Prevalence rates quickly become fodder for politics. Several members of Congress and advocacy groups took the opportunity Thursday to promote continued funding for autism treatment and research. The $780 million Combatting Autism Act is currently up for renewal.
"This is a loud message to people in Washington that we need leadership here," said Liz Feld, president of Autism Speaks. "A national strategy that addresses all the needs of the autism community across the lifespan is what is needed now more than ever."
Others criticized the suggestion that the rising numbers reflect an "epidemic" of autism. Instead, Ne'eman argued: "Autism is something that we're born with, that always existed."
U.S. autism rates up 30% in two years; N.J. is highest in study
Stacey Burling, Inquirer Staff Writer
Posted: Thursday, March 27, 2014, 1:49 PM
A new federal report shows yet another increase in the percentage of children with autism, with New Jersey having the highest rate of 11 states studied.
The report, released Thursday by the U.S. Centers for Disease Control and Prevention, found that 1 in 68 children had autism in the regions studied, which were not representative of the country as a whole. In New Jersey, long a hotbed of the diagnosis, the rate was 1 in 45.
The disorder is almost five times more common in boys than in girls.
The rates, based on 2010 data, were up 30 percent from two years earlier. They have more than doubled both nationwide and in New Jersey since the first report was done in 2000. The CDC estimates that 1.2 million people under the age of 21 are on the autism spectrum.
Walter Zahorodny, an epidemiologist and psychologist at Rutgers New Jersey Medical School who directed data collection in New Jersey, said the new report should put to rest the argument over whether the increase in autism diagnoses stems from growing awareness or reflects growing numbers of children with the disabling condition.
"It's a true increase," he said. "It's a change of great magnitude. It's silly to go on debating that." He expects the numbers to climb higher before they plateau.
Jennifer Pinto-Martin, an epidemiologist in the University of Pennsylvania School of Nursing who worked on previous versions of the report, is not so sure. While the CDC has been using the same definition for many years, she said, changing attitudes have made it easier to get the diagnosis.
Both agreed that one reason New Jersey's numbers are high is that the state has particularly good record-keeping and services.
At a CDC briefing for reporters on Thursday, Coleen Boyle, director of the National Center on Birth Defects and Developmental Disabilities, sidestepped the "why" question by saying there is evidence that some of the increase is due to changes in diagnosis without elaborating on what is responsible for the rest of it.
The report, which is based on 2010 data, looked at the prevalence of autism among 8-year-olds in parts of 11 states. Overall, 14.7 out of every 1,000 children had an autism spectrum disorder. The part of New Jersey studied - Essex, Union, Hudson and Ocean counties - had 21.9. A similar report based on 2000 and 2002 data put the New Jersey rate at almost half that: 10.6 per 1,000.
Pennsylvania was not included in the most recent report. Pinto-Martin said it dropped out because researchers were unable to get education data, which is used to augment information from health-care providers. The four states included in Thursday's report that did not have school data all had lower autism rates than states that gave the CDC access to more information.
Nationally, the rate per 1,000 was 6.7 in 2000, 8.0 in 2004, 9 in 2006 and 11.3 in 2008.
Symptoms for people who are on the autism spectrum can range from mild to severe. The disorder is characterized by communication problems, obsessional interests and repetitive movements. Diagnosis is based on symptoms, not a medical test. The median age of diagnosis is about 4-1/2 years.
In successive reports over time, a growing proportion of children characterized as autistic have been of normal intelligence. Thirty-two percent were average or above in 2002, compared to 46 percent in 2010, the new report said.
The official description of autism changed last year when a new verson of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5, was published. The new CDC report used the old definition. Some autism advocates are concerned that the new definition will reduce the number of children with the diagnosis, leaving fewer kids eligible for special services.
Brain Changes Suggest Autism Starts In The Womb
by Jon Hamilton
March 26, 2014 6:30 PM
The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.
Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.
Organization of the cortex begins in the second trimester of pregnancy. "So something must have gone wrong at or before that time," says Eric Courchesne, an author of the paper and director of the Autism Center of Excellence at the University of California, San Diego.
The finding should bolster efforts to understand how genes control brain development and lead to autism. It also suggests that treatment should start early in childhood, when the brain is capable of rewiring to work around damaged areas.
The study grew out of research by Courchesne on development of the cortex in children with autism. In typical kids, the cortex is "like a layer cake," he says. "There are six layers, one on top of the other, and in each layer there are different types of brain cells."
Courchesne suspected that these layers might be altered in the brains of children with autism. So he and a team of researchers studied samples of cortex from 11 children with autism and an equal number of typical kids. The cortex came from areas known to be associated with the symptoms of autism.
In the brain tissue from typical children, the cortex had six distinct layers, each made up of a specific type of cell. But in the children with autism, "there are patches in which specific cells in specific layers seem to be missing," Courchesne says. So instead of distinct layers, there are disorganized collections of brain cells.
These patches of disorganized cortex would have different effects on the brain depending on where they occur and how many there are, Courchesne says. That could help explain why the symptoms of autism vary so much.
And finding that the damage isn't everywhere suggests how a child's brain might compensate by rewiring to avoid the trouble spots, Courchesne says. "That's one of our guesses about how it is that autistic children, with treatment, very commonly get better," he says.
The new study appears to confirm research from the University of California, Los Angeles showing that people with autism tend to have genetic changes that could disturb the formation of layers in the cortex.
And it adds to the already considerable evidence that autism starts in the womb, says Dr. Stanley Nelson, a geneticist at UCLA. "The overwhelming set of data is that the problems are existing during brain development, probably as an embryo or fetus," he says.
But some of the new study's findings are surprising and even a bit perplexing, Nelson says. For example, it's odd that only certain bits of brain tissue contain these disorganized cells. "Why is the whole cortex not disorganized?" he says.
It's also odd that 10 of the 11 children with autism had the same sort of disorganized patches of cortex, Nelson says. That's not what you would expect with a disorder known to involve many different genes, presumably affecting many different aspects of brain development.
So he'd like to know what researchers would find if they looked at hundreds of brains instead of just a few. "What fraction of all the kids with autism are going to have these small patches?" he says. "I think the jury's out on that."
Nelson is right that there's no clear answer yet, says Ed Lein, one of the paper's authors and an investigator at the Allen Institute for Brain Science in Seattle. But it's possible that many different combinations of genes involved in autism could lead to the same patches of disorganization in the layers of cortex.
Finding out whether that's the case will be difficult because there is a shortage of brains from children available to researchers. Parents of children who die — with and without autism — rarely agree to donate their child's brain to science.
Scientific and advocacy groups are trying to change that with a program that informs families about tissue donation and a website that encourages people with autism and their families to get involved in research projects.